Article: A Time To Act!

Cort is right. We have the "window of opportunity" now that we have to grab while it is open. That means supporting the Media Campaign, getting DreamBirdie's Video out into the public with its background info and eye-catching message, and we need to do more about CFSAC. NOW is our time. NOW.

I know I am beating on a dead horse but this is critical. About a year or more ago, Dr. Wanda Jones called me since I was just such a major pain in the butt (go figure!). Well, she was very honest and forthcoming about the issues that they (the CFSAC staff) face. The staff works very hard for us, which I think we can all see. But the single major problem with the CFSAC is that NONE - NOT ONE - of the DHHS Secretaries have bothered to read the CFSAC recommendations that have been placed on their desk by Dr. Jones. Those recommendations are NOT read, nor are they signed off on.

Guys: We sick, our advocates, and Dr. Jones and her staff can NOT keep this up. We MUST get Secretary Sebelius to read and sign-off on those recomendations this year - 2010. Email her - overcrowd her emailbox and ask her to pay attention to what Dr. Wanda Jones and the CFSAC people are doing. We have emailed and beaten up on people to get things done and we have been successful. So, email Sebelius and get her attention. And yet again - SHE WORKS FOR YOU. YOU PAY HER SALARY. EMAIL HER. BE GRACIOUS BUT TELL/ASK HER WHAT YOU WANT FROM DHHS AND WHAT YOU WANT HER TO DO.

Please don't give up, Dreambirdie. I think we are witnessing a deep change in the CFS world, and the patient community in particular. We need to act with the sense of urgency Cort has written about. We also need to experiment, try different outlets and methods. Let's see what works! If one project is not successful, then perhaps another one will be. Persistence is one of the qualities we will need to cultivate as individuals and as a community.

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I think its very important to understand that we need to experiment and learn...this is not a one shot effort. We need to be in this for the long run. Why not, for instance, identify people with video cameras and start to do a series of video protests in front of government offices around the world?

Cort Said: "I think its very important to understand that we need to experiment and learn...this is not a one shot effort. We need to be in this for the long run. Why not, for instance, identify people with video cameras and start to do a series of video protests in front of government offices around the world?"

When the man is right, the man is right. Think out of the box like the young lady who had the guts to go and videotape in front of various Washington DC buildings. That DID take guts since the guards will shoot and really don't like it when you mess around their buildings (9/11 scared Washington DC to its bones - obvious reasons since it is "ground zero"). But this young, brave woman and her Mom and friend DID IT.

Think out of the box. We have some amazing and creative people out there who have neat ideas that they need to open up and share. NOTHING is too weird or out there. In fact, "out there" GETS the attention we must have.

Please do the basics of emailing Congress, journalists, DHHS, etc. But also think of the really great stuff like DB's Video and the gutsy young woman who went and videotaped in front of Washington DC buildings.

Oh yea! Join and be a part of a super-sonic major media campaign - Worldwide!!! We have blown past the 1,000 member mark today and have hit the 1/2 way point in donations. We have picked up speed and people have caught on that THIS is what must be done.
((Thanks again to Cort for putting this Campaign out there in words that I could never express))

That sort of thing can grab people's attention though - which is why tabloids do it in the first place. I'm just fearful that it's now a bit of an old trick (maybe not so much in America?).

How about some others:

"Ignoring this group of patients may have allowed an incurable retrovirus to contaminate the blood supply and infect up to 7% of the American population. Abandoning them has put us all at risk, and yet the government continues to invest less money in to researching CFS than hay-fever."

"CFS has a more disabling impact upon sufferers than a severe stroke, yet the government invests less money into understanding the disease than hay-fever and has left patients feeling abandoned. Now two scientific papers from four separate labs indicate a link with an incurable retrovirus that our inaction has allowed to enter the blood supply and infect up to 7% of Americans. Ignoring CFS has put us all at risk and government policy needs to change."

"Two independent scientific reports from four separate labs now indicate that ignoring this group of patients has allowed an incurable retrovirus to contaminate the blood supply and infect up to 7% of the American population. Yet the government continues to spend more on researching hay-fever the CFS."

Hmmm.... this is harder than I thought. Maybe I did get kind of lucky with the first one. Tabloid and over the top could be the way to go.

Maybe take out the 'up to' as otherwise it sounds too tentative?: "Has ignoring this group of patients allowed an incurable retrovirus to contaminate the blood supply and infected (up to) 7% of the American population?" Although it's possible that without the cautious 'up to' it would make people think "I'd have heard about it if 7% of the population had a retrovirus.

Maybe I'm just engaging in the sort of perfectionist all-or-nothing behaviour which perpetuates my CFS!

If you think there's anything I could do to help, let me know (although I could well not do it).

We need to state the economic costs of CFS and the numbers of sufferers. Most people think CFS is insignificant. We need to tell them that it costs the US economy over $20 billion per year (Jason et al) and affects over 1,000,000 people. This is the most important message of all.

If you say "7% of healthy people have a HIV-like virus", people will ignore your message as it will not gel with their world view - how bad could the virus be if that many healthy people have it?

The same goes for associating these viruses with HIV. They aren't much like HIV at all, the only similarity is that that they are both retroviruses.
You need to say that according to articles published in top american scientific journals including Science and PNAS, a significant portion of people may be infected and could be prone to developing cancer or CFS in the future.
You have to imply that those people are at risk and that these numbers are based on scientific investigations!

Let me repeat the point - if you are too alarmist, people will ignore our message. You have to look at the message from the perspective of someone who doesn't know anyone who suffers from CFS.

LJS, we understand your concern of wanting to see an ad before donating. We expect a big flood of more donations when we put forward the samples. I'm sure you understand why we would want to offer multiple options at once and also make sure they are accurate before we put them out. That is the process we are in now. On the Cause page on Facebook, we have a topic where we have patients discussing what they want the main message to be. Those of us designing the ads are taking thoese comments into consideration as we come up with options.

Because, these ads are responsible, but strong and challenging with the patients vote on the end result of what they want, I feel confident this is worthy of your financial support.

From my perspective, this is why I am supporting it with my donations and my services:

1) This will be a direct, unfiltered message from the patients, which I feel has long been absent in much of the debates about government policy, research funding, etc. While patients have been sending letters, petitions and speaking at CFSAC, their message has not gotten into the public arena. I love that my efforts are empowering patients, allowing them to have some control over something relating to their illness. I am giving them a platform to be heard. I consider it my gift to my fellow patients.
2) This will get the public involved in the conversation. The issues involve more than patients, government leaders, patient organizations and researchers, it involves the public at large through the spending of their tax dollars and the spreading illness affecting more and more.
3) See number 1
4) This has not been tried before or if it has been, it has not been tried in the last ten years.
5) This type of advocacy works for other issues.
6) This is an opportunity to make a point and get their attention because of the virus.
7) See number 1.
8) I have trust that the patients are smart and able to make good decisions.
9) This is unifying patients from all camps, from all over the world and with all sorts of beliefs. So much divides us as a patient community. The fact that this campaign is largely by majority vote means each person's contribution is valued and will influence the end result. This may bring us together in a way that nothing else has, as long as we keep our eye on the big picture.
10) See number 1.

For these reasons, even though the details of how the ad have not come out, just knowing it comes from patients is enough for me to support it now.

I would just love to see what happens! I have no idea. How great would it be to get it in when the CFSAC is meeting. I think its an intriguing idea - Esther came up with a great phrase = let's give it a shot! :victory:

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No....Are you asking for permission to do something or Are you going to do something...
I say " We patients are Going to Do something" so not "let's give it a shot", It is "Just Do It" Nothing against what Esther is saying, but it is time "To Act" not to bow our heads any longer and be lead like sheep in circles by "Our Federal Health Agencies" last time I checked we pay them...

What do we say??? Well we have beat the CDC drum for too long asking for help, so Let's make specific Demands. Make it short and to the point.

Give a short Bio on ME/CFS, Ignored for 25 plus years and now a new Retrovirus has been linked to ME/CFS and Prostate Cancer by the WPI, Cleveland Clinic and the NCI and then the Demands, again specific points with how to resolve the demands...such as 1) Fund Centers for Excellence for proper diagnosis and treatments in major cities.... Resolution: 1) WPI is up and running, a Cash infusion would slingshot them into treating patients and doing Clinical Trials , Miami with Dr. Nancy Klimas has a clinic which could easily convert into a Center, Dr. Bateman in Utah... You get the idea. This CFSAC meeting should be Patients not just telling their History with this debilitating illness, but Demanding CFSAC to push the DHHS. So it is time "To Act". Now that I have opened my mouth I shall open my wallet(Put up or Shut up) Thanks for listening

I think the shocking fact that in 20 years no secretary of the DHHS has ever even read, much less implemented recommendations by the CFSAC should be included in the ad.

I am personally done with the ineffectual CFSAC. We need to get attention in other ways, like this ad.

I could also see having a YouTube video campaign where hundreds of patients make simple videos from their beds and couches, with one agreed-upon message, and then on a certain day, flood YouTube with them. There would be a press release to the media that this is happening and why. This would be our ACT-UP, because we can't actually march through the streets.

This IS out ACT-UP and it needs to be powerful - no panty-waisting :Retro mad:

The Sierra Club put itself on the map when it ran an ad that said "would you flood the sistine chapel so you could see the ceiling" It was about a dam on a part of the Grand Canyon no one ever visited. The ad didn't really make sense if you looked at it closely but it raised a huge outcry. It put them on the map.

I could also see having a YouTube video campaign where hundreds of patients make simple videos from their beds and couches, with one agreed-upon message, and then on a certain day, flood YouTube with them. There would be a press release to the media that this is happening and why. This would be our ACT-UP, because we can't actually march through the streets.

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I really like your idea, Caledonia... but it is going to be a BIG challenge to get hundreds of patients to make simple videos for youtube.
I have hard time getting just 50 to post a comment on my CNN I report page. http://ireport.cnn.com/docs/DOC-484879

I think I mentioned before that I had great difficulty trying to post at ireport. I've been trying for weeks and FINALLY managed to get through today!

The key for me was up in the top left hand corner, there was a button that said something like 'this is for US only - For International Click Here'. After I clicked that, I managed to log in successfully then hunted down your page again and finally commented.

Certainly not easy to figure out - perhaps others have had problems as well.

I know I am beating on a dead horse but this is critical. About a year or more ago, Dr. Wanda Jones called me since I was just such a major pain in the butt (go figure!). Well, she was very honest and forthcoming about the issues that they (the CFSAC staff) face. The staff works very hard for us, which I think we can all see. But the single major problem with the CFSAC is that NONE - NOT ONE - of the DHHS Secretaries have bothered to read the CFSAC recommendations that have been placed on their desk by Dr. Jones. Those recommendations are NOT read, nor are they signed off on.

Guys: We sick, our advocates, and Dr. Jones and her staff can NOT keep this up. We MUST get Secretary Sebelius to read and sign-off on those recomendations this year - 2010. Email her - overcrowd her emailbox and ask her to pay attention to what Dr. Wanda Jones and the CFSAC people are doing. We have emailed and beaten up on people to get things done and we have been successful. So, email Sebelius and get her attention. And yet again - SHE WORKS FOR YOU. YOU PAY HER SALARY. EMAIL HER. BE GRACIOUS BUT TELL/ASK HER WHAT YOU WANT FROM DHHS AND WHAT YOU WANT HER TO DO.

Give a short Bio on ME/CFS, Ignored for 25 plus years and now a new Retrovirus has been linked to ME/CFS and Prostate Cancer by the WPI, Cleveland Clinic and the NCI and then the Demands, again specific points with how to resolve the demands...such as 1) Fund Centers for Excellence for proper diagnosis and treatments in major cities.... Resolution: 1) WPI is up and running, a Cash infusion would slingshot them into treating patients and doing Clinical Trials , Miami with Dr. Nancy Klimas has a clinic which could easily convert into a Center, Dr. Bateman in Utah... You get the idea. This CFSAC meeting should be Patients not just telling their History with this debilitating illness, but Demanding CFSAC to push the DHHS. So it is time "To Act". Now that I have opened my mouth I shall open my wallet(Put up or Shut up) Thanks for listening

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I agree write letters and emails to Sebelius. She is in charge of health care. And we have no health care, no clinics. WPI and other centers should be funded to handle the patients that will flood in. This need is there no matter what NIH is doing. And don't give up, all the officials must be hearing about this from patients all over.